A Letter from Jeff A. Hoerle, President, FIRST Board of Directors

Dear FIRST Members,

FIRST enjoyed an exciting 2016, highlighted by our National Conference in San Diego, which saw a record 473 attendees connect with each other, with medical professionals, and with FIRST staff. I was privileged to be able to speak with many of you--a father and son from Australia, a long-time member from Texas, a family with two affected daughters from New Jersey--hear your stories, and learn from your experience. We are all partners in our community and we are stronger through our shared engagement. During 2016, FIRST reaffirmed its commitment to engage with members and to reach as many current and new members as possible. We will do this again in 2017 with a record-breaking 13 patienty support forums! Connecting provides solace and solutions; we learn best--about tips for daily treatment or advances in science--when we interact with each other.

Whenver possible, I speak with individual members and their families to improve my understanding of how FIRST can make a difference in people's lives. It is conversatons with members--including my affected 10-year-old daughter Sasha--that help me get past the board strategy discussions and monthly update reviews. In one recent conversation, a FIRST member of nearly 20 years emphasized the importance of sharnig insights and being able to trust the information that comes from FIRST. We aspire to meet this need through events like the FIRST to Know calls and a revamped website. Our goal is to provide as many opportunities as possible for members to connect and learn from each other. We are all experts in our own ways.